'Doctors said they could do no more and sent me home to die – I'm still waiting'

Baroness Chapman: the House of Lords is the most egalitarian place she has ever worked in

By Melissa Kite

12:01AM GMT 06 Feb 2005

The Government's Mental Capacity Bill continues through the House of Lords this week, where it will meet staunch opposition from Baroness Chapman of Leeds. Melissa Kite meets her

Baroness Chapman of Leeds is holding court in her House of Lords office. She is bold, assertive, brimming with humour and thoroughly enjoying her newfound status as a peer of the realm.

It is difficult to imagine that when she was born with brittle bone disease, doctors feared that her disability would limit her existence to such a degree that her life would not be worth living.

"When I was born, the medical people said I would be blind, I would be deaf, I would be unable to communicate and I would have no noticeable mental function. Forget it. My life was worth nothing," she said. She cast a look around her red-carpeted office, at the leather chairs emblazoned with the House of Lords portcullis, the piles of embossed stationery and her personal assistant organising her schedule, and added: "That is a little bit different from what I have managed to achieve and where I am today."

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Nicky Chapman became the first person with a congenital disability to be appointed to the House of Lords under the People's Peers initiative when she took up her seat in October last year. Her maiden speech was unforgettable, causing a storm in the Upper House as she condemned the Government's Mental Capacity Bill because "if this Bill had been passed 43 years ago, I would not be here".

Lady Chapman argued that, as a sufferer of brittle bone disease, the proposal for living wills could have led to her having been denied life-saving treatment. The Bill, which allows an appointed relative or friend to make medical decisions on a patient's behalf could become a "licence to kill", she said.

Labelled euthanasia by the back door, it continues its committee stage in the Lords on Tuesday and opponents are hopeful that ministers are preparing concessions. It then returns to the Commons where it was passed only by a knife-edge vote in December.

Lady Chapman said she would continue to vote against it unless loopholes are closed that could allow patients to have treatment withdrawn against their wishes. "I can see areas where this law could be used and abused. It could open up doors for people who are very frail to be allowed to die. However, I do think concessions will be made. This is not like any other Bill when you can change it again if it's wrong. We have got to get it right now. I won't be happy until I can see the concessions on the table."

As the baroness manoeuvred her electric wheelchair around the plush corridors of the Lords, exchanging witty small talk with fellow peers, it was chilling to think of that doctor's long-distant diagnosis that she had "no noticeable mental function". But Lady Chapman does not blame the doctors. In 1961, she was one of the first people with brittle bones to survive birth. People with such disabilities were often put into a home or given up for adoption, but her parents simply would not take the doctors' word for it. They insisted that their daughter was neither blind, nor deaf, nor was she mentally beyond hope. "That Christmas they brought me a teddy bear and I reached out for it. Their view was that even if I was blind and deaf there were still ways I could be treated so that I could enjoy life. People talk about such disabilities as if they are unbearable but how do they know how it feels?

"When I was a few months old the doctors said there was nothing more they could do for me, they sent me home to die – and I'm still waiting.

"I'm sorry," she adds, laughing. "I do have a very strange sense of humour."

The sheer energy of Lady Chapman's conversation belies the fact that she is only 2ft 9in tall. Her personality is so large that her tiny form seems to dominate the room as she talks movingly about the clear parallels between her own experience and that of Charlotte Wyatt, the baby from Portsmouth whose parents have been fighting to overturn a "do not resuscitate" order. "I really feel for her parents. If they say they can see an improvement in their child, which is what they have been saying, then they should be listened to.

"I think that in any situation a person should be given every chance to survive."

Lady Chapman also finds chilling the case of an acquaintance recently advised by doctors to give up her newborn son because he had Down's syndrome. "They said put him in a home, forget about him. He is doing very well now. The parents are bringing him up with the rest of the family."

Lady Chapman is astonished that she was chosen for elevation to the Lords. She was "not the acceptable face of disability", she told me. "In a lot of ways, being this different makes it easier for me. I can't hide it. People have to confront my disability as soon as they meet me. One of my earliest memories is being three or four and my mum saying: `Well, Nicky, you have got to get used to people laughing at you or you will never go out'."

Has she got used to it? "Yeah, it's strange," she said in her distinctive, high-pitched Yorkshire accent. "You develop a shell. If I'm having a bad day it might upset me. If I'm with family or friends I get upset for them."

However, that does not make her a fan of political correctness. She prefers people who get sincere and honest words wrong to those who use the right language and then "stab you in the back".

Her conversation is peppered with jokes, many at her own expense. It is this humour that has served her well through the years. She came into the world with 50 fractures. ("The midwife," she adds, "was not impressed"). She has suffered 600 fractures in all and countless incidents of eye-watering discrimination. Every now and then, people point and laugh at her in the street. "You think things have progressed and then something like that happens and you realise that nothing's changed."

As a child, no school would accept her and so her parents taught her to read. At five, the local authority provided a tutor for two hours a week. When she was eight, she won a place at the John Jamieson school for the physically disabled. A further education college in Leeds followed and a degree in mathematics and management. Employers, however, refused to give her a chance. Eventually she taught computing to young offenders and began a career helping the most disadvantaged in society, work that the independent panel on peers appointments described as "inspiring". She is the chairman of the management committee of Leeds Centre for Integrated Living. A passionate Leeds United fan, she also chairs the Leeds United Disabled Organisation which campaigns for access for disabled fans.

Lady Chapman was forced to give up paid employment after breaking a leg so badly that it did not heal. She now depends on benefits and fears that the clampdown on incapacity benefit proposed by ministers last week could have a serious effect on people like herself. "I worry," she admitted. "I could find myself in this trap. At the end of the day, the scroungers will get away with it. The people who are vulnerable and need the money are those who are filling in the forms honestly and not exaggerating – and they will be the ones who suffer."

She said that she may well oppose such legislation. She also intends to campaign for integrated education – "special schools are really good at teaching people to be disabled".

Lady Chapman describes the House of Lords as the most egalitarian place she has ever worked in. "I didn't expect it to be this accessible. Everywhere else I have had to go in there and change attitudes. Here, people assume that because I am a peer, I must have done something to deserve it. Everyone has made me feel welcome."

She spends three days a week in the Lords, then it is back to being Nicky Chapman, living in a bungalow on benefits and going to watch Leeds United at Elland Road on Saturdays.

"I'm living two lives. I feel like two Nicky Chapmans. My family are very proud of me, but they treat me just the same.

"On the day of my induction, I was dressed up in the red ceremonial robes and my brother said `you look like something escaping from Santa's sack'. That made me laugh." And this time, I take my lead from Lady Chapman and allow myself to laugh, too.